The push/crash part of chronic fatigue syndrome is well known to people with ME/CFS. Exert yourself too hard physically and/or mentally and you ‘crash’ – your normal symptoms flare up, sometimes new and exciting ones show up and you’re hurting. In scientific terms a crash is called post-exertional malaise (PEM) and unless you’re managing your ME/CFS really well you’re going to have to deal with it…. sometimes frequently. I wanted to explain what it feels like when I crash so people can gain a better understanding of the struggles faced by ME sufferers like myself and maybe help someone they love along the way.

For me a crash feels like I’m falling out of control. I imagine I’m falling down a deep, dark hole (like a dry well) My instinct is to fight it, to put my hands out trying to grab onto the walls but this only causes more injury and makes things worse. The more I fight when I’m crashing the longer and more severe the crash becomes. I feel anxious because I know what’s coming. My mind races trying to find a way to avoid the pain and exhaustion, that by now is inevitable. Added to this I also feel somehow that I have caused this to happen. I feel it’s my fault for overexerting myself, but the truth is I didn’t do anything wrong and it’s not my fault I am ill.

So instead of fighting, I have to trust that if I allow myself to fall, I will eventually hit the bottom and I have to trust that the impact won’t be too hard. The scariest and most frustrating thing about a crash is I don’t know how long it’s going to last but I have to trust that, if I rest, then eventually I will start to feel better.

So I’m at the bottom of the well, injured but without any means of escape. All I can do is rest and wait, knowing that if I rest, in time a ladder will appear. This could take days, weeks or even months but when it appears I can slowly begin to drag myself to safety. I find this resting period very hard. My brain is still just as overactive and my anxiety and depression take over. I slowly climb the ladder one rung at a time. I may stumble a few times and slip down a couple of rungs but I know if I keep going I will eventually reach safety.

When I crash I feel weak, heavy, exhausted and pathetic. It feels like someone has removed all my blood and replaced it with lead. It feels like gravity is playing tricks with me. Everything hurts, it even hurts to think. I’m hypersensitive to everything including noise, light, smells and touch so I spend my days in a darkened room. My tinnitus gets worse and screams at me. My senses are heightened, yet I feel disconnected from reality. I’m not saying any of this to get sympathy but when you have a chronic and isolating condition like ME/CFS you feel like you don’t have a voice, so today I’m giving myself a voice.

This ‘crash’ after overexertion makes me very wary of doing new things. It actually makes me scared to do anything just in case it causes a crash. I avoided any activity and interaction with others for a long time due to this fear but it only made my mental health worse. The experts say you have to pace yourself to try to avoid crashing but I personally find this very hard to do. I will talk more about pacing in a future post.

The more times I crash and recover the more equipped I feel to deal with the psychological side of my illness. The best advice I can give to someone going through a similar experience is; rest and be kind to yourself. You haven’t done anything wrong to cause the crash, it’s not your fault you have ME/CFS. Trust that by resting you are doing what’s best for you body at that moment. I know it can be very isolating but please don’t be afraid to ask for help. By just surviving you have proved how strong you are. Take care.

I have just watched the film Unrest. What an incredibly powerful and moving film. I’m not going to lie, it was very upsetting for me to watch, it’s like she’s telling my story. I have been through almost everything she documents in the film. Although my health is starting to improve, the memories of how bad I was 4 years ago are still very raw. Her thoughts were my thoughts ‘I really don’t want to die but it’s very hard to call this living’

Unrest tells the story of Jennifer Brea, and others like her (myself included), who are stricken with Chronic Fatigue Syndrome, or ME (Myalgic Encephalopathy). People suffer from ME to varying degrees. Some get better with time. Some are bedridden for years, their lives effectively stolen by an illness that is not fully understood, nor taken seriously by many medical professionals.

The film starts with some disquieting images, from home video footage which document the struggles faced by Jennifer. It then opens up to show other victims of the disease. She goes online in search of answers and stumbles across a whole community of people just like her, all with their own stories to tell about life with this debilitating illness.

Jennifer initially began filming to demonstrate the seriousness of her symptoms to her doctors, but the end result of her video diary is an incredibly moving and powerful work.
Unrest is visually stunning and it sympathetically tells the story of fellow ME sufferers. It strikes a perfect balance between the factual and the emotional. It acts as an educational tool and it should be compulsory viewing for all medical professionals. It discusses the pressure put on relationships and the lack of understanding from the medical world. But rather than being depressing it has a positive and empowering message. ‘We will not be ignored, we will not be forgotten. I am still here’

I urge everyone to watch Unrest especially if you know someone who suffers from ME. It will give you a greater understanding of what it’s like to live with ME and it may help you offer support to your loved ones. I know it can be frustrating caring for someone with a chronic illness as it’s hard to know how you can help but the most powerful words you can say to someone who has an invisible illness are ‘I believe you’

I would personally like to thank Jennifer Brea for turning the camera on herself at her most vulnerable time, it must have taken a lot of courage. Her bravery has given a voice to the ‘forgotten one’s’, trapped in their own living hell, in darkened rooms isolated from the rest of the world. Now it has been documented on film, I hope we, the ME community, will finally be believed and taken seriously. I feel hopeful for the future.

When you suffer from a chronic illness or have mental health issues, it can feel like you have no control. I have always found this to be the most frustrating and challenging part about being ill. My deteriorating health spiralled out of control so rapidly I felt overwhelmed. Each day I felt like my body and mind were betraying me and conspiring to make my life a misery. Each day I would tell myself ‘just get through today, tomorrow will be a better day’ but there are only so many times you can tell yourself this when in reality the ‘better days’ were nowhere to be seen.

The reason I started this blog was because, I wish I knew then what I know now. When I’m writing I pretend I am talking to the broken and suicidal woman I was 4-5 years ago. I hope by sharing my experiences and knowledge I can help others and give people hope. With small steps you can gain back some control over your life and health.

*Steps to taking back control* (Words of encouragement to ‘broken’ me);

1. Take small steps. Tackle one symptom at a time.

When you have a complex list of medical conditions it’s unlikely that you will find one remedy for them all. If you try to find a remedy for all your symptoms at once you will be disappointed and feel overwhelmed.

Therefore, you need to decide which symptom is having the biggest detrimental affect on your health, and tackle that first. For me, that was anxiety. Anxiety affects my ability to cope with everything in life including pain, fatigue and stress.

I started taking CBD oil and practicing mindfulness meditation in an attempt to reduce my anxiety levels but along the way I also noticed improvements in many of my other symptoms.

2. Try not to give into frustration

Try not to get frustrated if you health deteriorates. The severity of symptoms for conditions like ME and fibromyalgia can fluctuate quite dramatically day to day. It’s not a step backwards, just part of the journey.

3. Don’t isolate yourself.

When even speaking is exhausting and painful, it’s easy to feel isolated. Reach out to family and friends. If you don’t have a solid support system, take steps to build one. I withdrew from all social contact for many months because I feared the negative impact it had on my physical health. For days after speaking to friends I would be exhausted. But my mental health suffered from this isolation. Sometimes it’s worth the pain and exhaustion for a few minutes of interaction with friends and family. Laughter often causes me pain but I still enjoy a good guffaw.

4. Educate yourselfLearn as much as you can about your condition. Knowledge is power when it comes to getting the best treatment available and keeping your sense of independence and control.

5. Do what makes you happy

As much as is possible, keep doing the things you like to do. You’ll stay connected as well as boost your self-confidence and sense of community.

6. Take one day at a time.

I know it’s a cliche but it’s important to take one day at a time. Some days, just to survive, I could only think about the next 5 mins. Worrying about tomorrow can be depressing and can also increase anxiety.

7. Stop fighting yourself. Don’t beat yourself up.

When I do too much, or I let stress affect my health, I often beat myself up. My favourite phrase, that I repeatedly told myself when my health was at its worst was, ‘you f**ked up!’ I blamed myself for my crash or deteriorating health. But it’s not my fault I’m ill, just the same as it’s not your fault. Be kind to yourself.

8. Take time to remember how bad you were and congratulate yourself for how far you have come.

During the bad days, when my physical health deteriorates and depression hits, I make a conscious effort to remember how bad my health was 4-5 years ago. By focusing on that, I can see how far I’ve come. It often lifts my mood and makes the bad days easier to manage.

9. Don’t be afraid to ask for help

Admitting you are not coping and that you need help does not mean you are a failure, quite the opposite. Asking for help shows strength and means you are taking positive steps to gaining back control over your life and health.

10. Try not to worry about what other people think.

Only you know what it feels like to be in your body. No one else will truly understand, even if they want to. They cannot feel your pain, exhaustion, anxiety, fears. They do not know the battles you face everyday and the strength it takes just to survive. They may think you are exaggerating or just lazy, but that doesn’t matter. It’s your journey not theirs.

11. Rest and Pace yourself

Resting does not mean you are lazy. You are giving your body what it needs to recover. You don’t have to do everything at once. Pace yourself and enjoy the little moments in life.

12. Have realistic expectations and celebrate each little achievement.

It’s taken my body years to get this weak and exhausted so it’s likely to take years for it to repair itself. Rest, look after yourself and celebrate even the smallest achievements. By just surviving you are winning!

13. Finding a balance (Acceptance with a fighting spirit)

The push/crash part of a lot of chronic illnesses can be very frustrating. When you feel well enough, especially after a long period of being incapacitated, you want to do everything. But this only leads to a hard crash. I find when I’m active, my physical health deteriorates but my mental health improves. When I rest, my physical health improves but my mental health deteriorates.

So I often experience long periods of activity followed by long periods of exhaustion and depression. Try to find a balance

14. Remember you are not defined by your illness.

Living with a chronic illness can be all consuming. It takes over your life and it’s often hard to differentiate between your illness and the real you. You are still the same person you were before you became ill, you just have a few additional challenges to deal with.

15. You do have a future. Things can and will get better.

No matter how desperate life seem right now, there will be a time when you can laugh again, when your life will be worth living again. I remember the first day in years when I could finally see a future for myself, it was such an inspiring day and the memory keeps me going when I have bad days.Living with chronic illness can be stressful, but you can take steps to manage your condition and maintain a good quality of life. Learn as much as you can about your illness and treatment needs. Make time for activities and relationships that leave you feeling happier and supported, while avoiding people and things that stress you out. By adjusting your expectations and practicing self-care, you can make your health and wellbeing a priority and take back some control. Take Care x